Formula shortage forces families to ration formula


The Netherlands has what is called tyrosinemia. This means his body cannot metabolize a specific amino acid called tyrosine. To survive, she must follow a very low-protein diet, supplemented by a special formula made by Abbott. The formulation of Tyrex-2 is an amino acid-modified medical food. Without it, she wouldn’t be getting enough of the vitamins and nutrients that most people get from their regular diet.

Holland has lived by this formula all his life. When Abbott had to close its Sturgis, Michigan, plant in February, its formula was not recalled but remained stuck at the plant. That meant Holland had to quantify the preparation she relied on every day.

Holland uses about half the recipe she normally eats.

“We just wanted to try and make it last a little longer,” his mother Shannon Holland said.

Her mother said they were working with Claire nutritionist in Tulane to make sure she was getting enough nutrition.

“It’s kind of scary,” Shannon Holland said. “We only have one carton of formula left and we don’t know how long it will last. »

It may take several months for supplies in the country to return to normal. In the week ended May 15, 45% of infant formula nationwide were out of stock, according to data provided to CNN by real-time data tracker Datasemby, which estimates the number of products on store shelves.

“It’s still unknown, how long it will take, and it’s very stressful not being able to find a suitable replacement,” Holland said. “It’s also having an impact on (my daughter).»

The Dutch are not the only family under pressure from shortages.

Renee Steiber, who lives in suburban Chicago, said she had to start rationing the formula used by her son, Irving. Finding his specialty formula, Necotate Jr., became a full-time job.

Her 11-year-old son is counting on the formula. It’s made by Nutricia, not Abbott, but when Abbott’s customers couldn’t get their formula, they turned to Owen’s.

“Basically, they’re going to restore supply every month,” Steiber said.

Owen usually receives formula through a feeding tube four times a day. He can eat very little solid food because he has eosinophilic esophagitis (EoE), a rare condition where his body is basically allergic to many foods. Unlike standard food allergies that cause hives or allergic reactions in people, when people with EoE eat the food they are allergic to, it causes their esophagus to become chronically inflamed so that no one can swallow it.

Steiber had about five days left on her formula when her mother called the supplier as usual to place a new order. It was the first time she heard they didn’t. “I was like, ‘Oh my God, are you kidding me,'” Staiber said.

Over the next few days, she called all the pharmacies in the area, asked out-of-town relatives to pick him up, and searched for him online.

“The problem is, every time I swipe my credit card and find something, it just disappears and sells out,” Steiber said.

Steiber said she ended up breastfeeding her son less than once a day.

“I tried to stretch it as much as I could,” Steiber said.

For the last feeding of the night, she said she just gave him water instead of formula.

“I know it’s not the best nutrition, but at least it helps him feel full,” says Staber.

Fortunately, Stabber added, Irving didn’t lose weight. She said he had his usual energy.

“But I know it’s not ideal because it’s his main diet,” says Stauber. She is working with dietitians at Ann & Robert H. Lurie Children’s Hospital in Chicago to find alternatives for Owen that provide more calories and add more salt to her diet. Nutritionists were also able to find a new company to provide additional recipes. “But no one knows how long this supply will last,” Staiber said.

Danone, the company that produces Neocate Junior. — the original formula used by Steiber — said in a statement to CNN that it increased production and shipments to the United States.

“We understand how important it is for families to have access to these special formulations, so increasing production and supply has been our top priority since the shortage began in February,” the company said.

Dr. Joshua Wexler, Attending Physician in Gastroenterology, Hepatology and Nutrition at Lurie Children’s Hospital, specializing in EoE. He’s heard from several patients who choose to ration whatever formula they have — and have been doing so since late February or early March.

“You know, we’re seeing patients lose a lot of weight because, frankly, they have no choice but to ration,” Wexler said. “And there’s nothing we can do. »

Wexler said he understands that parents are doing whatever they need to do to make things work. This is certainly not ideal from a medical point of view.

Dr. Sahira LongRationing isn’t ideal for older children and even older babies who can eat solid foods, but “it’s going very well,” said a pediatrician and lactation consultant at National Children’s Hospital in Washington, D.C.

“When there’s a shortage, you have to do something different,” Long said.

“For children under six months, the risk is a little bit greater,” Long said. “You want to make sure they’re eating the fewest calories, and your pediatrician can help you count. »

Long says what parents absolutely want to avoid is adding less powder or water to their formula to make it last longer. “It can be very dangerous for babies,” Long said.

Long said she’s also heard from families who are considering making their own formula, but she doesn’t recommend it. “Honestly, the recipes I hear on the internet make me cringe,” Long said.

Holland said he was lucky recently that a Tulane nutritionist called Abbott on their behalf. Within two days, they received a box of formula milk at their doorstep. After the two-month supply runs out, they don’t know what will happen next. They said their dietitian asked Abbott for a date when another case could be sent, but they got no response. When asked about it, Abbott told CNN that the company releases a limited number of metabolic nutrition formulas on a case-by-case basis that have previously been put on hold due to urgent patient needs.

“Our top priority is to provide infants and families with the quality formula they need, and we are working with the FDA to reopen the facility quickly and safely so we can alleviate hospital formula shortages across the country,” Abbott said in a statement. said in an email.

But until the formula situation is corrected, Long and Wechsler recommend that families considering rationing formula first really talk to their pediatrician to determine what the right approach is.

“Don’t try to do this at home alone,” Long said.

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